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Information about all aspects of finances affected by a serious health condition. Includes income sources such as work, investments, and private and government disability programs, and expenses such as medical bills, and how to deal with financial problems.
Information about all aspects of health care from choosing a doctor and treatment, staying safe in a hospital, to end of life care. Includes how to obtain, choose and maximize health insurance policies.
Answers to your practical questions such as how to travel safely despite your health condition, how to avoid getting infected by a pet, and what to say or not say to an insurance company.

My Survivorship A to Z Guide

Managing Your Care Essential

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Note: This is a sample Survivorship A to Z Guide for a fictitious person we call Ellen. She is just diagnosed with Breast Cancer. To view a summary of her answers which led to this Guide, click here.

To get your own free, computer-generated A to Z Guide, click here.

Finding a doctor who specializes in Breast Cancer is invaluable.

You indicated that you have a primary care physician but not an oncologist (a specialist in treating cancer.) It would be ideal if you had both because their functions are different.. A primary care physician takes care of your overall health. An oncologist has experience with a particular illness and up-to-date knowledge. People with oncologists have the best outcomes for Breast Cancer. 

 

It is advisable to choose an oncologist and other specialists by comparing them to your ideal for each function, not just because of a recommendation. [Tell me more]

Choosing the best doctor for you is similar to researching an automobile -- but will probably take less time. It's time well spent considering the importance to your health

Many people find an oncologist by relying on a recommendation from their primary care physician or from friends. Even then, it is advisable to take the following steps to choosing an oncologist. .(You can interview doctors until you find the best one for you.)

Step 1:Confirm the type of oncologist you need. (For information about the various types of oncologists, click here.)

Step 2. Set criteria that work for you. For instance,

  • Recent experience in treating a large number of patients with your particular condition.
  • A good quality education.
  • Is a person you are comfortable speaking with.  It is important to be comfortable enough to tell the doctor all the symptoms you experience. What you tell a doctor is as important as any objective diagnostic tests.
  • You understand what the doctor tells you.
  • The doctor is a person you trust.
  • The hospital or health care facility where the doctor works or has "privileges" is top quality.

Step 3: Search for doctors that most closely fit your criteria. 

Step 4: Speak with the doctor's office to gain practical information.

Step 5: Interview the doctor

To learn more, see: Choosing An Oncologist.

HOW TO CHOOSE OTHER SPECIALISTS

You may need to see specialists other than oncologists. Consider varying what you look  for in a doctor depending on the doctor's function in your medical care. depending upon the function. For example, if you are seeking a second or third opinion, travel distance to the doctor and ease of parking aren't as relevant as with a doctor you see all the time.

For information about choosing a specialist, click here. For information about second opinions, click here.

For a list of comprehensive cancer centers see the National Cancer Institute list at www3.cancer.gov/cancercenters/centerslist.html#L22 offsite link

When choosing a hospital: Consider whether to stay in your area or go to a city hospital. Consider the hospital's track record with your procedure/condition, staff quality & infection rates. To maximize your stay, a patient advocate is almost a necessity. [Tell me more]

If you enter the hospital through the front door, there is usually time to choose which hospital to enter. If you've taken our suggestion for choosing a doctor, you have already considered the quality of the hospital with which he or she works or can work (has "privileges.")

Consider:

  • The hospital's reputation, including about the quality of the staff
  • The hospital's success rate with the care you will be receiving
  • Low infection rates. Aside from making your stay miserable, or extending it, infections contracted in hospitals are the fourth largest killer in America. Every year in this country, two million patients' contract infections in hospitals, and an estimated 103,000 die as a result, as many deaths as from AIDS, breast cancer, and auto accidents combined. (The hospital admitting office will tell you the hospital's infection rate when asked.)
  • Nurse to patient ratio - how many nurses there are for each patient. (Again, you can ask the hospital admitting office.)
  • Visiting hours.
  • Ability to have family membesr or caregivers stay with you.
  • A hospital that supports your wishes concerning end-of-life.

If there's a choice, decide whether you want to go to a surburban hospital near where you live, or to a larger, urban hospital. Suburban hospitals usually have more friendly nursing care, and are easier to visit for friends and family. On the other hand, suburban hospitals do not generally have the back-up staff of high quality professionals who've "seen it all," with a depth of doctors trained in other disciplines and high tech testing equipment in case they're needed.

To maximize your care in a hospital and minimize the chance of a medical error which may harm you -- you have to monitor your own care. You have to learn what to expect and how to deal with it. It's important to watch every pill you're given, every IV they want to put into you, even the way they take your temperature.

If you can't do the monitoring, have a patient advocate with you 24/7 if at all possible. 

Make your stay in a hospital easier by keeping in mind such things as:

  • Visitors are there for you. If timing is bad, or you need to cut the visit short, say so -- or ask your advocate to say it for you.
  • Keep people from calling and disturbing your rest by a daily posting on a web site such as CaringBridge.org offsite linkCareCalendar.org offsite linkLotsahelpinghands.com offsite link, or MyLifeline.org offsite link. or setting up a human phone tree (a system where you call one person who has an assignment to call a few more people, each of whom are assigned to call a few more people until your group is covered.)
  • Make your room more comfortable by bringing in photos and/or personal items.

When it's time to check out of the hospital, don't leave until you know what to expect, what to watch for, and what to do if what you're watching for occurs. This is called a discharge plan.

Always check your hospital bill. A high percentage of hospital bills have errors. If you can't read the bill, go over it with a hospital representative.

Follow the instructions about your medications. Medicines will not work if you do not take them. [Tell me more]

It is particularly important to take oral cancer drugs as prescribed. There haven't been many studies about the effects of not taking oral cancer drugs as prescribed because the concept is still so new. Traditionally, cancer drugs have been given through an i.v. in a doctor's office. However, there was a study reported in 2007 about  Tamoxifen, a therapy used for treatment and to prevent recurrence of breast cancer. The study found that women who took less than 75% of prescribed doses had a 16% increase in the risk of death compared to women who took the recommended dose.

  • Before agreeing to take a drug, understand the purpose of the drug, the risks and uncertainties.
  • Talk with your doctor about the fit with your lifestyle. For example, ask about side effects, the numbers of pills and number of times during a day you take each drug, and how you take it (such as with or without food.)
  • Take the minimum amount of the drug that will work for your condition.
  • Learn what to do if you skip a dose. If you travel, learn what to do if you cross time zones.
  • Follow the do's and don'ts. Especially: don't take a drug holiday (time off taking your drug) without permission from your doctor.
  • Use a commercial compliance aid (they don't have to be expensive) or create one of your own. Your own aid could be as simple as posting Post-it notes on your front door. For information about compliance aids, click here.
  • Don't take a "drug holiday" (a period of time during which you don't take the drug) without first speaking with the doctor who prescribed the drug. If you do take a drug holiday, be sure to tell your doctor.

Take news of medical break troughs with a grain of salt. [Tell me more]

The media has a habit of giving coverage to announcements of medical break throughs well before they have been sufficiently tested. Before relying on any such reports, use the same techniques as when conducting medical research.

For example:

  • Many reports concern break throughs in a test tube that have not yet been tested on human beings.
  • If break through tests involve people, they are usually a small number of people, with tests that involve a short period of time.
  • The companies announcing the news may have a conflict of interest.

Talk with your doctor or other health care provider if you have questions about new medical break throughs or anything else that comes to your attention from family members or friends, or your research.

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